Sorry I have not been blogging, I guess It's because I have been having a very difficult time adjusting and accepting Aliyah's disability. a disability that I am certain partially stole my daughter from me.
I feel as though I am in a better place,.... Because I am doing everything to get my daughter seen by any and every specialist in order to better understand what the hell is going on.
I am driven on the belief of EARLY INTERVENTION will better the outcome of Aliyah's quality of life.
Currently She goes to PT for 1hr three times a week, OT for 1 hour three times a week and Speech for 50 mins three times a week. I am trying to establish ABA therapy going for her and also trying to fit music therapy to her schedule.
she attends special education, during the school year its 5 hours 5times a week, and goes to summer school 3hours 5 times a week. At school she receives additional speech(1hr/wk) and Occupational therapy(45mins/wk). She has a augmentative device that helps her communicate.
Aliyah does AMAZING WITH SIGN LANGUAGE, btw.
On Facebook I have been feeling better telling my family and friends more about the current status on Aliyah and where I am with it. But it is a different story telling those same people in person, I get to emotional and cannot finish sentences.
6/14/13 published on Facebook " Soooooo today we went to Kennedy Kreiger Institute to get Aliyah's development evaluated. She is turning 4 in August. FOUR. yet she "scored" around 24months..... and I am okay with that. No, I am NOT embracing it, but okay with it, because she is MY ALIYAH. she smiles... she cuddles... she laughs and giggles.... this little girl is a WARRIOR.... Epilepsy still "visits" her every night, but she has not lost her personality of being a delight. She does have her grumpy days like any toddler.... For example she doesn't want to leave the beach so she kicks and cries and nothing I say will make her understand that its time to go, I do get these eyes looking at me as if I must be a horrible parent because my grown child hits me and cries hysterically, but what the hell do they know right???.... right.... I live in my own little world, and I am learning to be okay with it. Don't get me wrong but I do love the support of family and friends, but unless you lived in "my world" or walked in similar shoes, you will never understand this mom's pain..... Today is a good day because Aliyah laughs and smiles and her little brother is growing up to be VERY LOVING AND PROTECTIVE of his sister who he keeps calling his baby. He loves her and she loves him. As long as my little ones are smiling life is still good and okay:) its amazing when Aliyah excels all expectations and Bruce pushing the child that pushed Aliyah on the playground, lol he is her angel in so many ways."
Publishing that was a HUGE step for me. I am not always open to telling others where Aliyah is cognitively because I was afraid they would treat her differently.
Now for my marriage, its rocky.... Having a child with special needs keeps the relationship tense and unstable, though we do have great days when we both witness Aliyah do the unexpected, overcoming obstacles ... I know the whole saying how "only you control your own emotions" but my emotions to me depend on the type of day Aliyah is having.
My anger fuels me up the most. My anger on "why" did it have to be MY ALIYAH the one to have a severe form of Epilepsy really gets to me. So when nurses do not want to give me an appointment, she can thank my anger when I report her. Or her therapist running late, she can also thank my anger on firing her. And when the pharmacist messes up on Aliyah's medication, they can thank my anger on calling their head quarters to hear my complaint.
If I didn't have my anger I feel as though I couldn't do much. Depression doesn't get you out of bed. Its the anger that makes me feel that " Epilepsy will not win any battles, it can't..."
I do have happy days, they are just not enough to get me pumped up. with time I know this will change...Everything will be okay because my Aliyah be absolutely lead a pleasant and happy life.
I am trying to upload videos of her progress just having difficulty uploading it to this website. One thing that has kept me going is volunteering on anything that deals with children with special needs. My daughter is beautiful and will always have an innocent soul. I keep on telling myself everything will be okay and try to think of today, not tomorrow because I can only take it a day at a time.
I feel as though I am in a better place,.... Because I am doing everything to get my daughter seen by any and every specialist in order to better understand what the hell is going on.
I am driven on the belief of EARLY INTERVENTION will better the outcome of Aliyah's quality of life.
Currently She goes to PT for 1hr three times a week, OT for 1 hour three times a week and Speech for 50 mins three times a week. I am trying to establish ABA therapy going for her and also trying to fit music therapy to her schedule.
she attends special education, during the school year its 5 hours 5times a week, and goes to summer school 3hours 5 times a week. At school she receives additional speech(1hr/wk) and Occupational therapy(45mins/wk). She has a augmentative device that helps her communicate.
Aliyah does AMAZING WITH SIGN LANGUAGE, btw.
On Facebook I have been feeling better telling my family and friends more about the current status on Aliyah and where I am with it. But it is a different story telling those same people in person, I get to emotional and cannot finish sentences.
6/14/13 published on Facebook " Soooooo today we went to Kennedy Kreiger Institute to get Aliyah's development evaluated. She is turning 4 in August. FOUR. yet she "scored" around 24months..... and I am okay with that. No, I am NOT embracing it, but okay with it, because she is MY ALIYAH. she smiles... she cuddles... she laughs and giggles.... this little girl is a WARRIOR.... Epilepsy still "visits" her every night, but she has not lost her personality of being a delight. She does have her grumpy days like any toddler.... For example she doesn't want to leave the beach so she kicks and cries and nothing I say will make her understand that its time to go, I do get these eyes looking at me as if I must be a horrible parent because my grown child hits me and cries hysterically, but what the hell do they know right???.... right.... I live in my own little world, and I am learning to be okay with it. Don't get me wrong but I do love the support of family and friends, but unless you lived in "my world" or walked in similar shoes, you will never understand this mom's pain..... Today is a good day because Aliyah laughs and smiles and her little brother is growing up to be VERY LOVING AND PROTECTIVE of his sister who he keeps calling his baby. He loves her and she loves him. As long as my little ones are smiling life is still good and okay:) its amazing when Aliyah excels all expectations and Bruce pushing the child that pushed Aliyah on the playground, lol he is her angel in so many ways."
Publishing that was a HUGE step for me. I am not always open to telling others where Aliyah is cognitively because I was afraid they would treat her differently.
Now for my marriage, its rocky.... Having a child with special needs keeps the relationship tense and unstable, though we do have great days when we both witness Aliyah do the unexpected, overcoming obstacles ... I know the whole saying how "only you control your own emotions" but my emotions to me depend on the type of day Aliyah is having.
My anger fuels me up the most. My anger on "why" did it have to be MY ALIYAH the one to have a severe form of Epilepsy really gets to me. So when nurses do not want to give me an appointment, she can thank my anger when I report her. Or her therapist running late, she can also thank my anger on firing her. And when the pharmacist messes up on Aliyah's medication, they can thank my anger on calling their head quarters to hear my complaint.
If I didn't have my anger I feel as though I couldn't do much. Depression doesn't get you out of bed. Its the anger that makes me feel that " Epilepsy will not win any battles, it can't..."
I do have happy days, they are just not enough to get me pumped up. with time I know this will change...Everything will be okay because my Aliyah be absolutely lead a pleasant and happy life.
I am trying to upload videos of her progress just having difficulty uploading it to this website. One thing that has kept me going is volunteering on anything that deals with children with special needs. My daughter is beautiful and will always have an innocent soul. I keep on telling myself everything will be okay and try to think of today, not tomorrow because I can only take it a day at a time.
